Why I don’t think I have Cushing’s anymore (and how you can figure out if you are in remission too)

I have been trying to write as many posts as I can that relate to Cushing’s this month, as part of the Cushing’s Blogger Challenge, so here is the next in the series.  I know a question on the minds of a lot of Cushing’s patients post-op is whether they are actually in remission after surgery.  As I discussed the other day in another post, it often can take a long time to figure this out.  Neuroendocrine tumors are a special PITA this way.  The tumors are tiny and soft like toothpaste and it is common for very excellent, experienced surgeons to miss a tumor or part of a tumor during surgery.  And because the tumors spit out hormones they do damage and disrupt the body’s natural hormonal activities for many months, muddying the waters even further.

So how do you know if you are in remission?  The annoying but honest answer is that only time will tell.  In most cases, a lot of time.  Even though I am definitely still sick, I am convinced I don’t have Cushing’s anymore.  I will tell you why I think I am in remission in hopes it will help you figure it out for yourself too.  Every patient is going to be different, but I do think there will be a common theme:  you should see some of your symptoms resolve, gradually and progressively, after surgery.

So, here is what improved for me and the timing of the improvements.

Immediate improvements:

  • My brain fog and vocabulary improved immediately.  As soon as I woke up in my hospital room, I felt like my eyes were fully open for the first time in months.  It hurt to talk much because of the surgery, but I was able to follow the conversation around me.  I felt interested in following the conversation. I felt alert and sharp.
  • I started sleeping at night, every single night.

Improvements in the first six months:

  • My stamina slowly increased (even while tapering off hydrocortisone).  I wasn’t overthrowing foreign governments, but small things that used to be impossible I could now do on a regular basis.  For example, I remember the first time I was able to just play fetch in my living room with my dog.   Not possible with Cushing’s – possible two months post-op.
  • No more ‘roid rage.  I definitely had lots of crying spells post-op (that is going to happen to the best of us after our pituitaries are sliced and diced).  But I was no longer prone to fits of rage.
  • My hair started growing back.  I actually didn’t realize how much hair I had lost until I had big patches of spiky regrowth.
  • I lost some of the puffiness in my face and collarbone area.

Improvements six to twelve months out:

  • My acne disappeared.  This really didn’t start to happen until after the 9 month mark.  I was worried it was never going to happen and it was one of those symptoms that made me worry I still had Cushing’s.  But eventually it did go away.
  • My buffalo hump started to disappear.  I credit part of this to sitting in the sun actively trying to melt it.  Try it and let me know if it works for you too.
  • My blood pressure started to come down.  This has been slow (and my blood pressure still fluctuates a lot).  But there have been improvements.

Things that haven’t improved much

  • I haven’t really lost any weight, although the distribution has changed.  My stomach is smaller, as are my face and neck.  I am sure I have gained a little bit of muscle back. But the weight has certainly not melted off dramatically at the same rate it piled on.  Part of this could be because I have other issues that are causing my body to hold on to every pound for dear life.  But I know from other Cushing’s patients that had smoother recoveries that weight loss often didn’t start to happen for them until they were a couple of years out from surgery.   Don’t shoot the messenger!!
  • I am still really wiped out.  But even the fatigue feels different.  I don’t feel like I am in a daze and hit by a truck all of the time now.  Now, I can do a few things and then I need to rest.  And I don’t need to sleep for four hours straight when I do need a rest during the day – I can get by on 90 minutes.  Still not great, but definitely better.   Again, some of this is probably due to the fact that I am still sick with something, but part of it seems pretty normal for patients that are a year out from pituitary surgery as well.

The main takeaway is that you should watch for gradual changes in symptoms and do routine cortisol and ACTH testing too.  If you don’t see gradual improvement in symptoms – especially in the months after you have tapered off hydrocortisone – you better start testing for Cushing’s in earnest again.  But be patient and keep track of your symptoms over time, keep checking your pituitary and adrenal labs regularly while you recover, and you will figure it out (and hopefully be in remission).

If you value your sanity at all, here are a few things you should avoid doing while trying to figure out if you are in remission:

  • Don’t look for “the sign” you are cured.   There is no higher power that is going to rent a plane with a banner saying “YOU ARE CURED MY CHILD” and send it flying past your hospital window 18 hours after surgery.  It just isn’t that simple, so don’t make yourself crazy trying to look for it.  Focus on recovering from surgery – that is your one and only job in the first few months after surgery.
  • Don’t read my list above and say to yourself “Oh no! I am not sleeping well.  I must still have Cushing’s!”  When you got Cushing’s, it probably didn’t happen in the exact same way as it did for me.  You had slightly different symptoms and test results.  Your tumors and surgery weren’t exactly the same as mine.  Why should your recovery be exactly the same?  Similarly, there was no one symptom that determined your Cushing’s diagnosis and no one symptom will determine if you no longer have it either.
  • Don’t obsess over whether you “crashed” after surgery.  There is a lot of discussion and concern among patients over the importance of having a major crash in cortisol levels after surgery.  This is not a reliable yardstick for recovery for a variety of reasons.  The main one is that most responsible endocrinologists put patients on replacement steroids post-op to keep you from crashing.  Crashing is not safe or enjoyable.  And lots of patients, myself included, never crash.   On the other hand, lots of patients that did crash were not in remission.
  • Don’t obsess over one high cortisol or ACTH reading after surgery.  I had a cortisol level of 24 ten days after surgery.  Was I a little concerned about this?  Yes!  So was the Wizard.  But only a little – it is one piece of information that needs to be placed in the context of all the other information – it took several tries for the lab tech to find a vein that worked (that alone can cause a little spike in cortisol!), I was only 10 days out, I had other signs of remission.

Labs fluctuate, symptoms come and go gradually.  You already know all of this from getting Cushing’s in the first place.  Don’t throw all of this knowledge in the trash after surgery.  You are still dealing with a wide array of symptoms and fluctuating labs.   This disease is full of grey areas.  You were diagnosed with Cushing’s based on a collection of progressive symptoms and labs.  Determining whether you are in remission is no different.  Stay calm and focus on recovering.  The rest will reveal itself in time.